I am a mom of 3 beautiful kids. Marley has autism and left hemiparesis Cerebral Palsy. Skylar has recovered from sensory processing disorder and my boy, Xander, is neurotypical with severe, life-threatening food allergies.

Monday, March 26, 2012

Those that know me, know that I am determined, feisty and
even a bit pushy when it comes to my kids.
Most of that I owe to my mother. (Well, the pushy part is a little my
dad). I am one of three girls and all of
us are now mothers. We are all strong in
our own ways. Especially when it comes
to the health of our kids.

Growing up in the 70’s, we weren’t given medicine for fevers
or pain. When my mom didn’t like the
idea of numerous vaccinations, she didn’t take us back to the doctor. I only remember going to the doctor once
while growing up. We always ate dinner
together. Homemade meals. Nothing fancy….but a meat, starch and
vegetable always. We played
outside. We did most everything as a
family. And most of all, my mother taught us to think for ourselves. To consider the source when gathering
information. What does the source have
to benefit? These are lessons that have served me well in my daughter’s
recovery from autism.

I hear so many parents of children with autism say “I saw
the pediatric neurologist and he told me that there is nothing that can be
done. He told me that there are no
studies that show the benefit of a GFCF diet so he didn’t recommend it. Then he made me feel like it was my fault for
having a child when I was so young….or too old….or I am just not disciplining
correctly.” To them I say,
“bullshit.” Stand up for yourself. Stand up for your child. Are you seriously not going to try a new diet
that thousands of parents have found beneficial because your 70 yr old doctor
told you to wait for the studies? Who
has time to wait? Who is going to pay
for a study on food? There are no
pharmaceutical companies to benefit so I wouldn’t hold my breath.

So why are we afraid to question our doctors? Have we been so conditioned to believe that
their knowledge is the only knowledge that is worthy of our time? I am a firm believer of being respectful of
everyone’s opinion but that does not mean I have to follow their advice. I collect data myself. I stay up late researching efficacies of
different therapies on pubmed. I see the
nutritionist, the chiropractor, the neurologist, the OT and anyone else that
has any information to share and then weigh my options. My daughter’s recovery is at stake. And for that matter, the health of all three
of my kids.

In my battle to recover my daughter, I have found that the
most important tools are an incredibly healthy diet, free of any allergens or
food that triggers a reaction, very low sugar intake, getting the GI tract
healthy with probiotics and daily magnesium citrate, supplementing with
vitamins and minerals, and listening to other moms’ success stories. Finding out how other kids have recovered.
And keeping the faith that it can be done.
Autism is treatable. Of course it
is.

It is a different world now than it was when I was growing
up and only 1 in 10,000 kids was diagnosed with autism. But we can learn lessons from those
days. Days of less doctor visits, less
vaccinations, less medicine, fewer antibiotics, more family time and healthier
meals.

We don’t need to be afraid of doing our own homework. We don’t need to be afraid of asking serious
questions at the doctor’s office and changing doctors if we get a response that
makes us unhappy. We don’t need to be
afraid of putting our kids on a dairy-free, gluten-free diet for fear that it
is too hard or that our kids just won’t eat if we don’t let them eat things
that are toxic to them. Our kids are
counting on us. There is no time to be
afraid. Every minute counts. Every meal counts. Let’s stand up for our kids and do what our
mothers taught us. To be strong. To be brave and to fight like crazy for our
kids.

Thursday, March 22, 2012

It was 2008. Marley
was 5 and Skylar was 2. I left the
girls with Chris so my friend, Jennie and I could attend a spa party in the
area. An acquaintance of mine had this
all set up in her house….massages, facials, manicures and YES…even a “spiritual
counselor” there for our enjoyment. It
was to raise money for a local charity, and lord knows…I needed a break. So after my facial, I walked into the dining
room for my appointment to talk to the lady who supposedly could “see my
aura”. I have always been
interested in those who have a sixth sense so I was interested in what she had
to say but I was completely unprepared for what happened.

I sat down across from her and smiled. She was not much older than I am and looked
like everyone else you would see on the street.
She let me get comfortable then looked directly at me said, “I know this
is a day of fun for you and I am sorry but I see blackness in your heart. What is it that you are holding inside that
makes me see blackness in your heart?” I
was surprised by own reaction. I started
to shake and tears immediately welled up in my eyes. It was like I needed to talk about this but
no one had ever asked. Before I knew
what I said, it was out. I had said
it. I said, “I let my 5lb premature baby
girl with a brain bleed get the Hep B shot and many other shots afterwards and
now she has autism.” Wow….there….it was
out. Did I really say that? Good God!
How did I say that to a complete stranger and hadn’t even told my
husband? But she was gracious and
actually said to me ”Oh…so YOU were the reason I was supposed to come here
today.”

I stopped shaking and smiled through my tears. And then she said something that will stay
with me forever. She said, “Your
daughter chose you to be her mother. You
should be proud. There is no need to be
sad. There is no need to feel
guilty. These are life’s lessons and
that is why we are here. To grow and
learn.” The rest of what she said is a
blur. But those are the words that I
carry with me.

I know that the knowledge that Marley has imparted on me has
saved her little sister and brother. I
am sorry she had to be the guinea pig.
I’m sorry that I had to learn about out-of-the ordinary allergic
reactions from her. I’m sorry I wasn’t aware enough to do my homework before
vaccinating. But I do acknowledge that
because of her, I am a better person.
And I am honored that she chose me to be her mother. I am honored that she saw strength in me that
I didn’t know I had. And I am honored
that she thought me strong enough to share what I have learned with
others. Maybe she chose me because she
knew I would fight like hell for her.
Maybe she chose me because she knew I would try to help other kids along
the way. Or maybe, I just needed to grow
spiritually. I don’t know. And I won’t until I cross over.

There are many people that tell me that they are sorry that
they weren’t there for me during that really hard time in my life when Marley
was regressing and… well…you know the story.
But I tell them….it was my journey.
I shared it with Chris and Marley.
And we had to live through it to grow.
And I am still living through it.
And still growing and still learning.
My heart is softer now and my words are kinder. But I have a fighting spirit that is stronger
than ever. My daughter WILL heal. And Chris and I will be there to see her
succeed. So there is no reason to be sad
for us. I feel like the luckiest girl in
the world.

Tuesday, March 20, 2012

I have to say…this is hard for me to write. I am the type to focus on the “how to get
better” and not on the “how did we get here?”
But it is part of Marley’s story, albeit, the hardest part. Was it in my imagination? Was she really the sweet connected baby I
remembered her to be? Did the vaccines
take a toll on my baby? So just today, I finally pulled out the baby videos along
side her vaccination schedule and all the doctor’s notes, sat down with a box
of tissues and pressed play. I needed to
know.

The beginning was wonderful.
She was so cute and responsive.
She made great eye contact. By 10
months old, she was starting to use words like bye bye. Then at 12mos, you can see a bit of a
regression after her 12 month chicken pox and polio vaccines. But she bounced back. She is still looking at me when I call
her. At 14 months old, I watched her
play peek-a-boo with the cat through the window and laugh. I watched her have a pillow fight with daddy
laughing when he called her name. She
was mouthing every toy, but she was still talking. When she started walking at 16 months old,
she was saying mama, dada, papa, bye bye, kitty and a few other words. She was late to walk because her left side
was affected by her brain bleed. But she
did it. She was determined. I looked down at the doctor’s notes at age 15
months. She got a clean bill of
health. She was cognitively behind one
month, but was catching up to her adjusted age.
(She was a preemie.)

Then it happened. At
18 months old, she got an MMR and a DTaP.
That is 3 live viruses and 3 dead ones.
Apparently, her immune system couldn’t take it. It rocked her world. The home videos start to turn ugly. We take her to the beach. She cannot pull herself out of the
water. We try for about 30 minutes but
she just screams and thrashes and heads back to the water.
I keep watching. It seems the
only things that can soothe her are music and Sesame Street on TV. She dances, but no longer dances FOR me. She dances because she is rocking to the
music. She no longer looks at me when I
call her name. The tantrums turn
scary. They go on for an hour or longer
sometimes. We even video taped one. It made me shake all over to hear those
screams again.

Then there is the comment that will stay with me forever. Marley’s nana told me, “I used to come and stay at your house and
listen to Marley babble in her crib for at least 30 minutes in the
morning. Just playing. Just using her voice. Then it stopped. I didn’t hear her anymore”. That was like a knife to my heart. The very true realization that there was nothing. No noise.
Just screams. My baby stopped talking.
She stopped babbling. She stopped
responding to me. She stopped looking at
me. She was gone. It was like someone came and took her voice
away one night as she slept. That was
the day the house went quiet.

Our life was pretty ugly for a while. We endured out-of-body like tantrums. Earth shattering screams. Anything and nothing would set her off. She would hurt herself and others during
these episodes. We took her in for an
EEG to check for seizures. It came back
clean but they said that doesn’t mean she is not having them. It just means they did not catch her in the
midst of one. But the worst is when my
rock of a husband finally caved. He
cried. He NEVER cries. He was so afraid of Marley hurting herself. Then is when we started looking for
help. REAL help. Not medication to drug her up. (Believe me, we were offered the open-ended
Rx of Prozac for my 2 year old.) No….we
needed REAL help. We needed to heal our
baby. That is when our autism road to
recovery began.

Chris was surfing the web and he turned to me and said, “I think I found something.” We watched a video of Dr. Bernie Rimland
talking. He is the founder of DAN! Defeat Autism Now! It looked interesting and it was our best
lead since we walked out the pediatric neurologist’s office just shaking our
heads at the doctor’s condescending mannerisms and offering of Prozac to our 2
year old baby girl. We watched Dr. Rimland some
more. This looked interesting. He was saying that our kids are
SICK. That there are many approaches
like diet and supplements that can help.
Chris said “There is a conference in Boston coming up next month.” I remember saying “I don’t think we can
afford for me to go.” And then my life
partner said to me…”I don’t think we can afford for you NOT to go.” And boy was he right. That is why I married this man. When push comes to shove, he stands up for
what is right…no matter the cost.

I did go to that conference in Boston in 2005. I met other moms with similar stories and
learned their successes. I listened
intently to the most cutting edge science coming out of Massachusetts General
Hospital in Boston. And finally, I cried
because I didn’t realize that her 10 loose bowel movements a day WAS NOT
NORMAL. I cried because I had just
watched my daughter slip away. And I
cried because I was finally getting come answers. My daughter would start to get better. I just knew it.

Tuesday, March 13, 2012

Since the time we suspected our daughter had autism at 2 ½
years old, we have been treating our daughter biomedically.

We put her on special diets.Her bowel movements improved.We
put her on supplements to treat her specific deficiencies. Her focus improved.We did ten mild hyperbaric oxygen treatments
(mHBOT).She began to talk.Years more mHBOT treatments, her
socialization improved.She began to
come back to us.We detoxify her on an
on-going basis using a far infrared sauna.We see better socialization.We
treated her GI system medically.Her
colonoscopy showed signs of chronic constipation and endoscopies showed
eosinaphilic esophagitis.These results led
to more allergy testing and removing more allergens from her diet and life.Her horrible GI pain went away.Her behavior improved dramatically.Add to this, regular OT, PT and Speech
therapy and we have been a busy bunch.

It was September 2011.Marley was about to turn nine and was starting second grade (she was
held back a year) in the autism classroom.Excuse me, they call it the “system-level” classroom.She was mainstreaming about 30 minutes per
day but it was becoming clear that she could not handle the mainstream
classroom.By the end of September, they
had pulled her out completely.She had
come so far….but now, we were at a standstill.Her anxiety was becoming more and more of a problem.Her rigidity was taking over her life.

I am a believer that if you listen carefully, life will
point you in the right direction.You
just have to listen.And let’s be
honest, I was eager to find something that would move my daughter forward.So when a fellow autism mom posted about her
experience at Brain Balance, I was cautious but interested.The program focuses on finding the weaker
side of the brain, and then stimulating the weaker side until it can work
cohesively with the stronger side.I
asked around and the program got good reviews from my most trusted source –
other autism moms that I have met on my journey.So by October 2011, we were off and
running.Again.

The Brain Balance initial evaluation results came as quite a
blow to me.I am very proud of the
progress Marley has made over her short lifetime.But here, they were doing standardized
testing which measures her against her “neuro-typical” peers. In addition, they
were testing her primitive reflexes, her eyes, her coordination and the
like.So when I heard the words “Your
daughter is in the 1st percentile among her typical peers”, it
brought me back to the reality that although she had come so far in the past 6
½ years, we still had a mountain to climb.

We threw our lives into the program.The daily at-home exercises, the listening
therapy in one ear four times per day, the driving 45 minutes each way to get
to the program to stay for an hour of intensive right brain stimulation both in
the sensory-motor room and then in the cognitive room.But my Marley took to it as she always
does.No complaining.Just recognizing that this is part of
life.

The regression was awful.And school took the brunt of it to be sure.We saw tantrums and horrible rigidity---the
exact thing I took her there to get rid of!But then glimmers of success.Like
little rays of light shining through periodically.With only a little coaxing, she picked up an
intermediate chapter book and proceeded to read the whole thing by
herself.And she was proud to tell me
what each chapter was about.

But the big success was during Christmas break.Her brain had a chance to rest and her body
was starting to catch up to her brain.She could talk to family members on the phone without delays and with
appropriate responses.My sister (Marley’s
Aunt) actually cried tears of joy when she talked to Marley.She said, “I have never had a conversation
with her before.”It is so moving when
you can finally get to know a child that has always been physically there, but
unable to connect.My excitement for the
program was staring to grow.I haven’t
felt this way since hyperbaric oxygen treatments gave Marley a voice.

Then, in early February 2012, I went to meet with Marley’s
school team.The mainstream teacher
informed me that they have been slowly re-introducing Marley to the mainstream
classroom and Marley was participating.Actually raising her hand to answer questions and being an active
participant in the classroom discussions.Not simply tolerating being there.Before, it was an exercise in futility.Trying to get her used to a situation that was so over-stimulating to
her that she could not bear to be there.She would run out the door.She
would scream.She would stim.So when the teacher told me that my daughter
was actively participating, I almost fell out of my chair.My daughter?Raising her hand to answer questions?Yes…the teacher told me.And
working with other children in reading group.So…she proceeded, I want her to join my class more often.Everyday for reading, science, social
studies, recess, lunch, and specials.If
all goes well, after Spring Break, we will have her join us for math as
well.My heart was beating out of my
chest.Then, her special education
teacher proceeded to tell me that she was scoring at 85% or above on all of her
end-of-unit testing in math and reading.

I knew what I had to do.I said to this group of educators and therapists…”My goal for her is to
have her fully mainstreamed by third grade with only resource room help.”They all looked at me and smiled.They said, “It is an aggressive goal, not
certainly not unattainable.”

Marley’s end of first session Brain Balance testing showed
she had moved up EIGHT YEARS in auditory processing.No wonder she was doing so well at
school.We are currently in our second
session at Brain Balance because she still has some work to do.But now, everyday, I see improvements.She does her homework without fights.And she uses a pencil!Her writing was so bad before that she
refused to write…she would only type.

She is noticing smells like my coffee and things baking in
the oven.Her sense of taste has
changed.She used to like very spicy and
flavorful things.Now she can no longer
eat them.Her sense of taste is much more
that of a typical child.She plays with
her sister all the time.She asks me
about my day.She asks her sister
questions about school.Her little
brother amuses her.She sings him songs
and laughs when he sings them back to her.She is making friends at school.She comes home and tells me about her friends.Their names and what they did at school
together.She has never had a friend
before.Never. And that is the best thing that could have
come from this intervention.

Things that I did not dare to dream are coming true.....things like mainstream classrooms and friends. I was too scared to dream them for fear of
letting my daughter and myself down.But
apparently I was wrong.I need to dream
big.I need to know that anything is
possible.

Tuesday, March 6, 2012

There I was….driving in my soccer-mom minivan. My head whirling with many thoughts. But not really typical soccer-mom thoughts. You see, I am no average soccer mom. I am a mom to a beautiful young nine year old
girl with autism. And mom to stunning,
witty (and soccer playing) six year old daughter with sensory processing
disorder. And mama to a 19 month-old little boy who is so typical it makes me
cry.

I was driving to see the pediatrician for his 18 month old
check-up which usually is centered around vaccinations. In my head I was imagining how it was going
to go down when I told her no vaccinations today. How I would get the standard lecture. You
see, I put him on a very conservative immunization schedule and he was due for
his third DTaP shot today. I was
imagining what she would say when I told her that ever since his third HIB shot
at 15 months, he has had loose stools. I
just knew she would look at me like, “how could that possibly be related?” Just like she looked at me when I told her no
more shots for my second daughter after she regressed terribly after her third
DTaP shot at 12 months.

This pediatrician knows me. She knows my family
history. She knows that my father got
polio from a polio vaccine when he was a child and stayed in the hospital a
year. And that my father also suffered
from Guillain-Barre about five years ago for a six-month spell. She knows not to push too hard or I might
push back.

But then this song came on the radio. Lady Gaga’s “Edge of Glory”. My eyes welled up with tears and I felt my
strength come back. Because that is
where we are with Marley…my oldest. We
are on the Edge of Glory. We are getting
closer every day to recovery. Our latest
intervention is with Brain Balance and the progress we see is remarkable. It is like watching a flower bloom on fast
forward. It is nothing short of
miraculous.

And because I have followed my intuition, she is
healing. She is coming back to us. I have learned never to ignore
that intuition again. There was a time
where I put my children’s health in the hands of a pediatrician. But now I realize that doctors do not know my
children as I do. And every child is
different. They need to be treated as
such. So I have taken it upon myself to
be in primary charge of their wellness. To
educate myself on what is best for my children and to monitor their diet, their
sleep, and their exercise. I pay
attention to what foods cause problems for them with their behavior and bowel
movements. I learn what supplements can enhance their wellness and why.

And my biggest task and
life’s purpose is to bring my oldest back from the grips of autism. Because she belongs with us. Not with a diagnosis. And our family is on the Edge of Glory. Waiting for Marley to join us.

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About Me

I am a mom on a mission to bring our daughter back to us from the grips of autism. This journey has shown me the importance of nutrition and supplementation in ASD kids, detoxification, green living and a great support system for healing. I have learned many lessons...some the hard way and I have created this blog to help anyone who may be interested in the lessons we have learned.